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Saturday, November 22, 2014

hello!

I simply can't believe I haven't blogged since April.... 6 months ago. That's crazy but it was a much needed break from here. Life has thrown more curve balls that we never expected but we are beyond thankful and hopeful for a new "healthy" year. I won't go into many details because most of you know the journey we've been on with my daughter's health and now my 14 year old son. I know things could be so much worse so I try hard not to complain and constantly remind myself this is just a bump in the road. We have so many people praying for us and that, my friends, feels amazing! Thank you all! So here's a quick update on things...I've given up the Savvy studio. (gosh it feels good to say that...I thought I would be sad but it's a happy relief) I knew it was something I needed to do but also wanted to make it work. Having the studio and not being there as much as I should left me feeling guilty. But after Ava's medical problems and the start of this scary journey in December, I was hopeful I could be there for her and her needs and successfully run the studio, host workshops and run the blog. I partnered up with another local photographer and we had big plans of making the Savvy Studio something great and successful! And overnight I made the decision to end it...to quit the partnership and give up the studio.... I can't explain what came over me but I knew I had to end it. I've always listened to heart no matter how crazy it seems. God was letting me know this wasn't right. But I just didn't know why. I felt I let people down but I knew I was doing the right thing. Within a few weeks, I was sure I did the right thing. ( I guess I am going into details now) At the end of July my fourteen year old son was diagnosed with Ulcerative Colitis. He had been getting sick for months but was too embarrassed to tell us his symptoms. We had no idea! We were relieved it wasn't anything more serious (I was worried it was cancer) and he started medication and we thought things were great. Well, they weren't. He started his first week of high school and came home from football practice looking worn out (which wasn't unusual...they worked those boys so hard in the heat) so we didn't think much of it. After an hour of being home, he started feeling faint and very sick. A trip to the ER that night confirmed he wasn't getting better. He was admitted to the hospital the next day and was a sick kid! He continued to get worse over the next week in the hospital and they worked hard finding the medications to help him. After 8 days in the hospital, the GI doctor said they were starting Remicade, an IV infusion that he would have every eight weeks. This was our last hope....the doctor informed us if this didn't work, they would need to remove Jake's colon in two days. And he would have a colostomy bag. (I'm at a loss of words right now...I can't explain the feelings and fear that I felt that day). My poor son...what a horrible thing for a child to have to endure. I know things could be much worse, but I'm pretty devastated at this point. I knew I wouldn't want the world to know if this was my situation and my body going through this so I didn't want to share the details of this with anyone but family and close friends. This would be so hard to go through for him and on top of that, having to hide it. But my sweet son got on Twitter and IG and ask his friends to pray for him! He put it all out there...the possibility of losing his colon and how life changing it would be. I was so proud of him! Within hours of the Remicade infusion, he starting improving! We know the prayers played a huge role in his healing. After 10 days in the hospital, we went home! This was over 2 months ago...but the struggles have continued for him. The medication saved his colon for now but he has bad side effects. The medicine suppresses his immune system. His body is constantly fighting infections. He feels terrible...and he doesn't even want to see his friends. He's on the homebound program for school. He's missed his freshman year so far, he missed playing football after training all summer, he missed homecoming. He misses his friends and his old life. But this kid is hopeful! And thankful for those praying for him. I'm so thankful my intuition told me I needed to give up my business. I know now where I'm meant to be...home focusing on my family. Not spending hours at the studio and then many more hours up editing. And not at workshops. I know how much I'm needed here being a full time mom. I do miss the creative side of things... and I do miss blogging sometimes. So I'm hoping to come back here more often and chat with my readers. (if I have any of ya'll still out there).And for a quick update on Ava...she's doing good! We still struggle with issues due to her epilepsy and she's on high doses of meds. But they seem to be working! We still haven't found a local doctor here that understands her type of epilepsy (ESES) but we are extremely thankful for her neurologist in NYC, Dr. Riviello. He treats her long distance and he's been a blessing. Ava has learning issues and has such a hard time in school. She loves school and her friends but learning is such a challenge for her! And Ava is a challenge to us...raising her can be a stressful thing. She has behavior issues and her medications make it worse. And I find myself stressed and yelling more than I should. I pray for more patience...and I know this is a phase. It will get better. She is still a sweet, precious girl that I adore! So I guess you can say life is always a challenge...and we are extremely blessed for each challenge. What a blessing it is each day to have this life! We are blessed with three precious children that I'm so thankful for!Happy Thanksgiving to you!

4 comments:

I was just thinking of you and your daughter the other day. (My daughter also has epilepsy) I pray that you are heading for a healthier year and thankful that you've pulled through the year you've had. Peace to you and happy holidays.

So very grateful you came back to blog about this. I have so enjoyed your blog and have missed it terribly. But at the same time I totally admire your decision to take a step back. I did a similar thing this past year and have been so grateful to have the extra time with my kiddos. Blessings to you all!